12.28.2010

Christmas 2010

Aside from being away from our parents' homes this year for Christmas, we had a wonderful Christmas! Instead of us going to them, our families came here!! On the 23rd my mom, dad, sisters, bro-in-law, and nieces were all here to help us celebrate. We did not have quite as much food as my mom always seems to have, but it was fun to host the family and cook for them. The girls were all so excited to open presents and before long Rylynn really had the hang of it. The biggest problem was that after opening something she'd want to play with it and didn't want to move on to the next one. I love my family all very much and am glad they came to celebrate with us. We finished the night off with the little girls having a slumber party on the floor, and the rest of us playing some not-so-intense games of Scrabble. Here are a few pics from our crazy bunch.
Tyler and Sydney had us play their version of 20 questions.
We loved the drawings they did on all our little pieces of paper.

Jessica and Rebecca brought this ridiculously huge canister of cheeseballs. Rylynn was beside herself!
These two, LOVE Dora! What a perfect slumber party with your cousin!!

It was weird to have only our family of three together for Christmas Eve, but we were thankful to be together. We spent the day napping and playing and then went to church. Rylynn was not in the mood to sit quietly. (She's been doing so good on Sunday mornings, but this was not her best showing.) She wanted to talk the entire time! Luckily it was the children's mass so we weren't the only ones with a crazy kid! After church we ate and opened presents.
Isn't she a doll in her dress and fancy new shoes?


I do have to say, that Rylynn was quite funny with the presents under the tree. As I wrapped them...


She stood on them...

She sat on them...

She climbed on them...

She even slept on them...

After Ry was fast asleep Gilly and I waited for Santa to make his special delivery and then we got to work assembling what he brought. We were up till 2:00 working on this thing, but she was thrilled when she saw what she had gotten on Christmas morning!

She loves her kitchen! We've been busy making cupcakes (thank you Aunt Caity) and so much more!

Later that afternoon, we had all of Gilly's sisters, bro-in-law, nephew and parents over to celebrate. We ate some more, played some more, and opened more presents! Mimi and Papi got Rylynn a Barbie Jeep and her cousin Jackson a JD Gator. They both enjoy playing the radio, but aren't too sure about making it go. I know by spring they'll be all over the place in these things!! We had a great time with all of them and were so happy we had everyone together.

Look out Jackson, I'm not sure you should let Ry take the wheel!!

It's been nice to have sisters and sister-in-laws coming over to spend time with Rylynn while they've had some time off. Ry has really enjoyed it, as have I. We even had a visit from her Nana. (We missed going to uvalde this year, but hope we'll be back by next year.)

Nana spoiled Rylynn rotten during her visit!


We are looking forward to a spectacular 2011! Keep us in your prayers and we'll continue to keep you all posted on our happenings.

With Love. . .
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Home Sweet Duplex!

This is the Dupe!!


Wow, what a busy three weeks we've had since I've last blogged. I apologize for the delay. There are a lot of things that I didn't get to in the last few weeks that I usually enjoy this time of year... Christmas cards, going out to see Christmas lights, the usual baking (although I still managed to do enough eating), lots of Christmas shopping and decorating the house with my many tubs of lights, wreaths, etc. This year we managed a last minute tree, two nativity scenes and a wreath on the front door. At least clean-up will be a cinch.

I will post all about Christmas in a bit, but let me get to the rest of it first.

Gilly, Rylynn and I are officially living in Hewitt (on the edge of Waco). We have found a nice little duplex to rent and we are unpacked and really feeling at home. Unfortunately Gilly is having to split his time with us here and out at the ranch a few nights a week, but it's becoming our new normal and will all work out. We are lucky to have leased out our home in Lampasas to a family with three girls. We hope they enjoy the house as much as we did and we look forward to moving back one day.

For now, Rylynn is officially listed for a heart transplant in the 2 category. Being a 2 is good news because that means she is still relatively healthy, but it also means that we are the lowest priority group. Her PRA numbers came back about midline and her blood type makes her a good candidate. Based on all the information that the team put together, they predict that our wait could be about 12-15 months. This is assuming that Ry stays pretty healthy, continues to eat and grow, and we don't encounter any other major obstacles. We will work to keep her from being exposed to anything that could jeopardize her chances for that heart. If Ry were to contract any type of cold, stomach bug, etc. she would be ineligible for a transplant until completely healthy again.

We know the call can come at anytime and although the odds are that we won't be getting "the" phone call for a while, it's on your mind at all times. We are trying to keep a bag packed and be ready at any moment. It's taking some getting used, but I'm sure as time passes it will not consume our thoughts every minute. For now we just need your continued prayers that Rylynn can stay strong and healthy until our turn comes.
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12.07.2010

The Wild Woman on the Eighth Floor!

Here are some pictures from our week in the hospital. Rylynn was such a trooper!
This was the first night. She had no idea she was in a hospital yet.
She was crazy all night and refused to put a shirt on for some reason! :)
This was Ry's favorite place in the playroom. She loved the kitchen! She sure hopes Santa brings her one for Christmas!!


This is a gingerbread house that Rylynn got to help decorate one afternoon.
She really just wanted to eat each piece of candy.

Pictures from her cousins.
Thank you Tyler, Sydney, and Shelby. They made Ry feel much better!

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12.06.2010

So happy to be home!

The Riojas clan is finally back in Lampasas, if even just for a bit! We got home late Saturday afternoon and have spent the past two days just enjoying time with Rylynn. Today it's back to work and beginning our move. We hope to have something in Waco in the next couple of days so we can begin to move the neccessities for Ry and I. Gilly will be able to pack up the rest over the next month. As soon as we officially have a place, we'll call the hospital and Rylynn will be listed. We hope to accomplish all of this by the end of the week.
I don't have any new information to share. We are still waiting to receive her PRA number back and should know today. We are praying for low numbers.
I have lots to get done today so I will have to leave you for now. Thanks for following and thanks for all the prayers and kind calls. We love you all!
With love . . .
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12.03.2010

What a week!

Saturday can not get here soon enough! We have all had about enough of this hospital room by now. Everyone here is doing their best to keep Ry content, but we're all about to go crazy!
I apologize for not posting sooner, but our days have been filled with tests, meetings, exams, labs, Xrays, MRIs and the list goes on. And when we're not busy with something, it's a full time job to try to distract Ry and keep her occuppied. We are lucky that she has some mobility with her monitoring devices, we're able to walk around the unit and hit the playroom twice a day which helps.
So here's a recap of our week since Tuesday and where we are now. Wednesday Ry had her heart cath which showed low pressures in her heart and lungs which is good with a struggling heart. Wednesday afternoon we were also officially approved by insurance to start a pre-transplant work up. As soon as the paperwork went through, Gilly and I sat down with the transplant team. (And they do have an entire team, but I'll get to that later.) We received some very grave statistics and also some inspiring stories, but no matter how you slice this it's not going to be easy for Rylynn especially and for Gilly and I as well. The transplant is our only option, but as they have told us time and time again "a transplant trades one set of problems for another set of problems", but our goal is to give Rylynn the best quality of life that we can. With a new heart she should be able to live a fairly normal life. Yes, the heart will grow with her. No, it won't last forever. Yes, we will ALWAYS have to worry about rejection. Yes, she will have to take meds everyday for the rest of her life. (Those are a few of the questions we get a lot.)
The transplant Docs also told us the one thing we were very afraid of... Lampasas is too far from Dallas to be listed. Rylynn must be within two hours of this hospital at all times from the moment she is listed. We were first told this would be today, but last night they said we have till next week. This is best news ever! It's hard enough to know your daughter has a failing heart and we're now waiting at the mercy of a matched donor, but we will also be uprooted and making some difficult moves :(
So that was Wednesday.
Yesterday was filled with conferences. We had to meet with child-life specialists, psychologists, social workers, financial counselors, nuerologists and more. Each one taking about an hour to evaluate Rylynn and interview Gilly and I, what a loooonnnngggg day! Today Ry is having an MRI, labs, and a chest Xray. She hasn't eaten or drinkin since last night and we have 3 more hours to go! Pray for us this morning!
We're hoping once we knock out the last few items that they will let us go tomorrow!! We will be headed home to regroup and start packing up. Ry and I will most likely be moving to Waco, we'll have to lease out our house and Gilly will be stuck splitting time with us in Waco and out at the ranch. It's heart-breaking that we had finally been settled in the home we wanted Rylynn to grow up in and had the perfect yard for her to run and play and now we have to suddenly (although hopefully temporarily) leave behind. It's heart-breaking that Rylynn will not see the horses and cows. It's heart-breaking that Rylynn will not get to visit her Gi-Gi and Pa-Pa or Mi-Mi and Papi in their homes. Augghhh... this is so unfair to her.
That's all I can write for now...

Here are the prayers we are asking for:
Pray that Rylynn's heart handles her sedation ok today.
Pray that her PRA numbers come back favorable today.
Pray for Rylynn's happiness.
Pray for Gilly and my strength.

With love. . .
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11.30.2010

Up Here in Dallas

So we've made ourselves comfortable and have refamiliarized ourselves with "Jack the Rabbit" dining and parking passes. This time around it's very different. Rylynn does NOT want to sit in her room, she wants to walk the halls or play in the play room. That's been the hardest part of passing the time here. I could not be prouder of how she has acted with all of the doctors and nurses, she is such a trooper!
So far we have received the standard EKG, Echo, and chest Xrays along with gathering her stats 24 hrs a day. Tomorrow we have been scheduled for a cath and pre-transplant work up. We are currently set for the 11:00 slot, but hope to be bumped up. Either way we will see a similar procedure to one that we've done before. They will put her under, give her a breathing tube and hope to enter through the groin. All of this will take a few hours.
After reviewing the heart function that has shown up on the echo here, the Drs agree that they don't expect to find anything that can be repaired while they are in there, but are going to measure pressures and check some functions between the heart and lungs. On the first night we were here they were hopeful they would see something that we could surgically repair, but as time passes is seems we are definitely on the transplant path.
Gilly and I have a million questions and concerns, but won't sit down to conference with the team until after the cath and work up.
Tonight we pray for a smooth cath procedure and recovery. Although she has done well in the past we must remember her heart is not as strong now. We also pray that the labs will show that Ry is a good candidate and will be an easy match. Please lift her in prayer.
Good night.
With love . . .
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11.25.2010

Happy Thanksgiving!


Despite it all, we plan to have a Happy Thanksgiving surrounded by family.
We hope yours is wonderful too!
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11.24.2010

Guess I lied...

So I guess you can try to prepare yourself for bad news, but it is no consolation as you hear the Doctor talk.
Ry was wonderful throughout her appointment this morning. It is often a screaming marathon and very difficult, but this morning she was perfect. She sat still and quiet through each piece of our two hour appointment with practically no tears. We were so proud and felt it was a great sign of good news to come, but unfortunately that was not the case. It seems that Ry's little heart muscle is getting weaker and even quicker than the Cardiologist could have expected.
What does this mean?
Well first of all, a not-so-happy Thanksgiving. :(
But more importantly it means we are headed to Dallas immediately. We will be in Dallas on Monday morning to admit ourselves. Because of the holidays, we were not scheduled for a cath, but Dr. Lemler says get yourself up here right away and we will work you in on Tuesday or Wednesday. They want to perform a cath (even though they don't think they will find anything other than what they already know) and while she is out, they will draw lots of blood and lab stuff. This will be used as they immediately place her on a transplant list. Yes, that is where we stand. Knowing that our very active and healthy and wonderfully perfect little girl needs a heart or we will very soon start to see her getting very sick. It is still so hard to comprehend, understand and accept.
I don't feel the need to continue this entry. We are overwhelmed with unanswered questions and look forward to talking with the transplant team next week. Mine and Gilly's hearts hurt and ask that you pray for our strength and for Rylynn's health.
We will keep you posted next week, please check back.
With love...
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11.23.2010

Tomorrow's appointment...

Prepared for the worst, praying for something better.
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11.16.2010

What a silly girl!


Who can resist a face like this?
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10.31.2010

Happy Halloween!

Happy Halloween from my little bed bug! She's giving her best scary face!
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10.27.2010

Prayer, Prayers, and more Prayers

It seems I'm always asking ya'll for something, but here we go again. If you could please spare us a few of those very special prayers for Rylynn, it's time we get back to it.
Yesterday was Rylynn's cardiology appointment. We weren't scheduled to go back until December, but because of her recent illness and based on the echo that they took while she was in the hospital, they bumped us up a bit. Gilly and I knew deep down that this may not be a good sign, but hoped they were erring on the side of caution.
Our appointment yesterday confirmed the Doctor's concern that Ry's heart function is not what we'd like to see. I guess you could say the function is ok, but the muscle is not pumping with the rigor that it should. I asked how concerned we should be and before I could finish the sentence his answer was very. If the heart muscle is truly tiring out, this will lead to the ultimate dirty word, heart failure. There isn't much you can do when the heart doesn't want to work.
Now, before we scream transplant and board the emotional roller coaster, we are supposed to remain calm and optimistic and hope that when we meet in one month we'll have some kind of better news. Dr. Rowe wants to discuss things with the folks in Dallas and see what they think. In addition, he has added two new meds to our daily regiment and increased the dosage of what she was on. This may make a difference as well. We are praying that maybe her heart was just worn out after her virus and maybe it will improve as she gets over this cough and congestion. It's hard to believe that our crazy little tot could have anything less than a perfect heart with as much energy as she has.
Please, please be sure to keep us in your daily prayers and I will keep you all updated as we know anything.
With love. . .
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Red Balloon Run & Relay

I'm really far behind on my blogging. Life has been very busy lately and although I often hope to sit down at the computer in the evening to post, I never do get to it. I am excited to final report on our first Red Balloon Run and Relay.
First and foremost I want to thank all of our family and friends who came to Dallas to participate and those who helped us give over $3000 to Children's Medical Center!!! It's something that Gilly and I could not have done alone and I know it will make a real difference to the Heart Center. We were able to visit with Cindy from Children's who is like family to my family! From the time I was waddling around the Children's hallways from appointment to appointment, to delivery day and through both surgeries, she has always made my family feel special and has helped us in anyway that she could. She was on Team Hearts of Fire who raised nearly $11k for the Heart Center. We were also able to see a friend of Rylynn's that we made who is just days older than she.
Gilly's sister Caity flew in from NY to walk and my sister, Tammy was stuck in an airport in Brazil, but still walked for as long as we did. (I'm sure security was beginning to get nervous watching this American woman pacing up and down her gating area!!)
The weather was beautiful and the atmosphere was great. I have a few pictures to share, but am still trying to get some from family who had cameras as well. Thanks to everyone for your support we love ya'll!
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10.08.2010

A great week

Rylynn has been feeling great this week. She is back at school and although it's taking a little readjusting, she is doing good. I had intended to post last week about a special visitor that they had at Rylynn's school. Unfortunately, with all the craziness I just never got around to it. Two weeks ago a clown came to sing songs and do a lesson about animals. The director wasn't sure how all the little ones would handle her and I knew Ry may not love it. I figured I would head up there to offer an additional hand and see what Rylynn thought. By the time I arrived, Rylynn was already standing in the hallway with her teacher!! Once the clown started playing music Ry decided she liked it. So I thought we could slip back in the door and she could watch on my lap. That lasted about 3 minutes. The clown made the mistake of making eye contact with Rylynn. She shot up and instantly wanted to get the heck out of there!! It was quite funny!!

So I'm beginning to wonder how well this Halloween is going to go over... it may be a long night!


We are headed to Dallas for the race this weekend. I have no idea what to expect, but hope it will be fun for everyone. Thank you to EVERYONE who donated to the cause! We have the best family and friends!! :)

With love. . .
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10.03.2010

Quick Update

We're home safe and sound and Rylynn is starting to feel much better. Today was the first day we started to see her old self which was reassuring. I'll post again soon, but I'm off to bed for now.

Thank you for all the get well prayers.

With love . . .
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10.01.2010

Rough Couple of Days

I'm going to keep this short because I'm using a computer here at the hospital, but I wanted to post an update.

Ry is battling a yucky virus (little cough and congestion) that led to an earache, but she's having a tough time fighting it. We came to Dell Children's on Wednesday night after failing to curb her temp at home and a rough case of the chills. She was shaking and starting to discolor so we came right in. They decided to admit us and we're still here two nights later. They have run lots of tests and are confident that its just a virul thing, but it's just a question of how well her body can fight it and how her heart reacts.
When we arrived she was severly dehydrated and her sats were quite low. We have controlled the fever much better, she has been hydrated with IVs but her oxygen levels and heart rate still aren't great. They have ordered an echo to double check her heart function, but don't expect to find anything concerning. We just have to break this bug. We still don't know if we'll go home today, but I'll try to update now that I found this computer!!
This was after a night in the ER and finally reaching a "bed" at 3:30 in the morning.

Ry perked up for a few minutes today when a very special visitor came to see her. This is Boone.

Please pray Ry's little heart will bring her through and we will be able to take her home today.

With love...

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9.08.2010

Join us...

As most of you know, one of the last things Gilly and I would get ourselves involved in is a 5k run. It's just not one of those things we do for fun. But believe it or not that's just what we've done.

On OCTOBER 9, 2010, Gilly, Rylynn and I will be participating in the RED BALLOON Run & Relay in Dallas. This fundraiser is very near and dear to our hearts. It is an event to raise funds for Children's Medical Center and TEAM RYLYNN will specifically raise funds to go directly to the Heart Center. During the last year Gilly and I have wanted to give back to the hospital, but knew that with the medical bills that we had to take care of it would be difficult to do. When I learned of this event I was thrilled!!

Please help us make a difference for other families who will experience a difficult diagnosis and come to Children's for hope and healing.

I know times are tough, but please consider making a small contribution to TEAM RYLYNN. Your prayers and support lifted Rylynn up, now help us once more and let's make a difference.

We'd like to invite you to join our team and walk or run with us or just make a small a donation to the team. To check it all out, just click on the link below or on TEAM RYLYNN in the side bar.

http://www.redballoonevent.org/site/TR?pg=team&fr_id=1080&team_id=1840
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Football season is upon us!


Football season is in full swing in our household. Luckily, Rylynn is her Daddy's daughter and has so far loved attending games. We've been out to support the Lampasas Badgers and the Aggies. So far our teams are starting off strong... yay!

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8.26.2010

Happy Days!

There's nothing that can put me in a better mood than a great weather day. On Tuesday we hit our 25th consecutive day of 100+ temperatures. When it's 108 outside you just can't take a little one out. And if there's one thing Rylynn loves, it's being outside. She will stand at the back door and cause a dramatic scene just begging me to open door! Well, yesterday the temperature dropped! It was a wonderful 25 degrees cooler. So yesterday evening we spent a lot of time outside playing :)

Sunday afternoon, Rylynn realized just how awesome walking can be. She suddenly decided that it would be better to just walk instead of crawl... and so she is. She hasn't slowed down since! Her teacher couldn't believe how she was suddenly cruising around the classroom on Monday. It took her 15 1/2 months to decide to do it, but she still beat her mom who was 16 months old before she was walking!!

One more thing to celebrate in this house is our great week at school! It took 2 1/2 weeks, but yesterday was the first day I dropped Rylynn off and there were no tears!! Yay! She really enjoys her days there now and I am thankful to be getting so much more work done during my day.

I hope you all are having a great day! Until next time :)

With love. . .
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8.16.2010

What a week

I'm not sure who this past week was harder on, me or Rylynn :(
Each morning Rylynn was excited to arrive at school, in fact, the first day she didn't even care that I had left. I was so proud, but also a little heart-broken that she didn't cry when I walked out. However, when I came to pick her up on that afternoon and each afternoon that week. She was upset. Ms. Mitzi, her teacher, is very encouraging about her progress and says that it may just take a little more time for her to really be comfortable all day. Some days she has good mornings and sometimes better afternoons, but I am having an awful time with the adjustment. She has already brought home a beautiful art piece and a coloring sheet. And we've been working on counting with our fingers. She loves to try to hold her fingers correctly although they are not even close to right yet!! I know she will learn a lot and she likes seeing her new friends. The great thing has been that each evening we've been able to spend quality time together because I've had productive days at the office.

Here's my big girl on her first day of school!!

This is Rylynn's nap mat I sewed. The teacher claims she lays
quietly talking to herself even when she's not sleeping.



Last week we went out to the ranch with Daddy for a little while. Rylynn LOVES seeing the horses and cows and "driving" the truck around the ranch. It's just so terribly hot we can't enjoy much time out there right now.

Just cruising around the pasture!


On Friday night, Gilly, Rylynn and I headed up to Sweetwater so that we could spend Saturday visiting Gilly's great Aunt Fay in Rotan. The big city of Rotan holds a lot of family history for Gilly. His mom's family is from there and has ties to the farm land still today that dates back for generations. Rylynn and Jackson had not yet met Fay so it was great to see her and introduce the little munchkins. We spent time on the farms, visited the cemetery and of course finished it off with a big meal at DQ! That's the only way to wrap up a trip to Rotan!!

Pictures from the farm. Think they are going to have a good year for cotton!

I'm so proud that Rylynn has now learned to fold her hands as we say grace and she likes to repeat Amen when we are done. So in church yesterday she shouts Amen after a quiet reflective prayer. Oh well, atleast she was participating!! So here's a question for all you parents... how do you get a toddler to last an hour during church?? All she wants to do is get down and play. She enjoys the first 15 minutes or so by dancing to hymns and folding her hands when directed, but then we lose it!! She's even a terror in the cry room because we try not to let her run around and try to make her sit between Gilly and I in the pew. Please someone tell me what is the trick?

I'm hoping Rylynn has a better week at school and I can feel better about our decision to send her. Everyone enjoy their last week of summer before it's all over until next year!

With love . . .

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